Background Little is known about potential different preferences between patients and their family members concerning content and timing of end of life decisions (EOLD) discussions.
Aim To gain more information about patients and their family members desires for EOLD discussion.
Methods We conducted a semi-structured interview with 89 palliative cancer patients and 68 of their family members. We asked them to rate the importance of six main topics (scale 1–10) and to choose their preferred timing (scale 1–3). Differences were analysed using the Mann-Whitney test.
Results In both groups “medical care” seemed to be the main topic, particularly for family members (M = 9,21, SD ±1,33; z = –2,86; p < 0.05; r = 0.004). “Nursing care” also appeared to be an important issue, but in contrast to the importance, it was chosen at a very late date as a topic of desired conversation. Family members chose “feelings” as a hot topic at a very early point in time (M = 1,42, SD ±0,79), in comparison to the patients (z = –2,71; p < 0.05; r = 0.007). They also showed significantly more interest in this topic (z = –1,98; p < 0.05; r = 0.047).
Conclusion The difference between the two groups in content and timing of conversations was larger than previously expected. “Medical care” and “nursing care” seem to be important for both groups, but while “medical care” should be discussed earlier, it seems that “nursing care” is only a topic of interest, when the general condition deteriorated. Interestingly, the topic “feelings” differed significantly between both groups and should be considered in EOLD discussions with family members.
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